BFS for over 40 years

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BFS for over 40 years

Postby c4110djh on February 22nd, 2014, 12:38 am

Hi all,
Just thought I'd check in after a long absence. I've had almost all if not all of the symptoms I've read on this board for 40 plus years now. I'm still okay. I really regret the years that I spent worrying needlessly. What I have learned is that an experienced neuro usually can detect a serious neuro disease within minutes of looking at you. If they say you're okay and tests indicate you're ok, please don't waste years worrying, like I did.

Please feel free to e-mail me with any questions since I don't come on board often anymore. I still have symptoms, sometimes a lot, but difference is I don't pay attention to them nor do I let them negatively influence my life. BFS is so common. Also, found the fibro posts interesting. I'm sure I have that as well. Also have been taking PPI's since they were prescribed. Did not know about the arthritis link! Thanks for the excellent info. Blessings to all.
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Re: BFS for over 40 years

Postby Watereddown on February 22nd, 2014, 3:14 am

Hey thanks for checking in.

Im curious, did you have sensory issues as well? Like tingling, burning, and the internal vibrations? I whole heartedly agree in trusting your neuro's, and Im slowly beginning to learn that.
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Re: BFS for over 40 years

Postby RobJ on February 22nd, 2014, 7:52 am

Your probably checking in because of new symptoms. I'm 20 years and counting with an elevated CPK. Been through it all.

Like I've posted many times, if you have weakness be concerned. Other than that stay away from Doctors, especially those local headache doctors, and enjoy life!
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Re: BFS for over 40 years

Postby UFGatorGuy20 on March 1st, 2014, 11:51 am

This board NEEDS people like RobJ and C4110! Folks that have had this syndrome for decades and are doing well. Their stories (symptom variance, things that helped, things that didn't) should be stickied along with the "why you don't have &LS threads." I'm pretty new to all this (< 1 year) and things are strange and seem to progress worse and worse in terms of new areas that twitch, aching, general discomfort. But, I have zero clinical weakness, clear EMG, very good nerve conduction study, clean MRI. I just finished walking 2 miles, did a quick chest and back workout, got in the dry sauna for 20 minutes, then laid in the sun for another 20 minutes. I felt like a champ while in the sauna and sun... literally no twitching or aching. Sitting here, my calves are firing off on me, my upper back is starting to ache, my elbows are a little sore, my fingers are tight... oh well...
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Re: BFS for over 40 years

Postby BFSBurger on March 3rd, 2014, 12:46 am

UFGatorGuy20 wrote:This board NEEDS people like RobJ and C4110! Folks that have had this syndrome for decades and are doing well. .


How about the folks who managed to control their symptoms, and sometimes completely eliminate them? We're here too!

-B-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: BFS for over 40 years

Postby mikes44 on March 4th, 2014, 5:32 pm

Does anyone know of any stats of how common bfs actually is? Is it a 1 in 1000 kinda thing or more common/uncommon than that?
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Re: BFS for over 40 years

Postby UFGatorGuy20 on March 4th, 2014, 6:45 pm

BFSBurger wrote:
UFGatorGuy20 wrote:This board NEEDS people like RobJ and C4110! Folks that have had this syndrome for decades and are doing well. .


How about the folks who managed to control their symptoms, and sometimes completely eliminate them? We're here too!

-B-


Totally agree BFSBurger! I've printed out a bunch of your threads and I'm following the protocols. Folks like you and SecretAgentMan are so valuable. Good to have both sides... folks that fought off their symptoms systematically and those that can tell us they've been where folks like I am decades ago!

Cheers! :D
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